Documenting Important Information and Worrisome Behaviors to find the right treatments
Keeping detailed notes on a person with Huntington’s disease aggressive and worrisome behaviors can provide useful information for the individual’s treatment team and others they come in contact with in the community. Good records can protect the person with HD, they can protect you, or the people who live with you. Sharing notes about what you’ve witnessed can also help ensure the person with HD is connected to appropriate mental health services, instead of going to the hospital or in extreme situations, jail. It may also protect you if you are falsely accused of neglect or abuse of the person with HD. You can use these notes to refresh your memory as you communicate with the doctor, if you are interviewed by the police, if you talk to a lawyer, or if you’re asked to testify in court. Being prepared with accurate information will help you manage any potential situation.
To get started, create a file, database, or document that includes all information pertaining to the mental illness and treatment plan of the person with HD. Keep notes and documents in a binder or portable file and store them in a secure place that is accessible to you.
Recording episodes of behavior in real time:
Most of us can’t remember details beyond 24-48 hours. Even details of very significant events begin to fade within days. For this reason, keeping a detailed record of events allows you to examine what triggered the episode, what interventions improved the situation, and then communicate the information accurately. It may be difficult to relive the episode while recording it, but having objective information is critical to proper care. You may want to provide this information privately to the treating physician, or even before a doctor’s visit. This allows the team to prepare to manage the situation in a way that validates the person with HD and protects those who report the information.
Your records should include:
- Date, time, and duration of episode
- People involved
- What everyone said or did
- What lead up to the incident. To understand potential triggers, start your record at the last moment you remember everything being normal prior to the episode.
- If you were threatened, but not physically assaulted, write down exactly what was said to you and describe the situation.
- If threats were made toward others, write this down too.
- If you were struck or injured, write down all the details including:
- Exactly where you received the assaults or injuries (e.g. your left arm or the back of your neck).
- How you were hurt (e.g. with open hand, shoe, or book).
- How many times you were hurt.
- How severe your injuries were (e.g. bruises, cuts requiring stitches, or broken bones).
- If there were witnesses, and if so, their names.
- Whenever possible, keep evidence of the injury and/or threatening behaviors such as:
- Photographs of your injuries.
- Recordings of threats (including any voicemail, text messages, social media posts).
- Torn clothing or property that was damaged.
- Bank and/or credit card statements (in instance of excessive spending).
- Names and contact information of witnesses.
- Your medical and other personal records.
Although aggressive behavior, such as verbal threats or minor physical interactions are common in HD, violence is not as likely. It’s impossible however to predict violent acts, and prior aggressive actions is the only reliable predictor of future episodes. Being prepared to manage early signs is the best way of protecting the person with HD, yourself, and your family.
Other information to document includes:
Diagnosis and Symptoms
- Documentation that the person has Huntington’s disease (letter from doctor stating the person has HD, genetic testing results).
- Clear description of recent symptoms (e.g. cognitive impairments, mood swings, motor symptoms, medical symptoms, suicidal behavior, aggressive behavior).
- History of substance abuse (drugs and alcohol), problem with gambling or other compulsions.
- History of trauma (e.g. history of neglect or physical abuse, tragic life experiences, immigration/refugee experience).
- History of recent loss (e.g. diagnosis of HD, job loss, loss of driving privileges, loss of family member).
- Things that make symptoms worse: (e.g. hunger, thirst, fatigue, specific people).
- History of self-harm: previous thoughts of and/or attempts to self-harm, previous thoughts of suicide and/or suicide attempts.
- History of harm to others: verbal threats, damage to property, invasion of personal space, assault, seriousness of injury to others).
Treatment Information
- Contact information for the treatment team/healthcare providers (family doctor, psychiatrist, case manager, employment counselor, occupational therapist, peer support worker).
- Preferred treatment style and/or favorite service provider.
- Preferred hospital or hospital where he or she previously received care.
- Contact information for HD Reach and other community workers or organizations involved in treatment plan.
- Prescribed medication (include all medications, not just the ones prescribed to treat the mental illness). Include dose, frequency and whether the person with HD is taking medications as prescribed.
- Allergies, including medication and environmental exposures.
- Hospital records (you should request these as soon as the person with HD is discharged from the hospital).
Strategies that Help
- Best ways to communicate.
- Coping mechanisms and strengths.
- Interventions that help the person with HD: (e.g. distraction, redirection).
- What helps when the person with HD is feeling and doing well (e.g. formal and informal supports, hobbies, activities, medications).
Information for Health Care Institutions:
- Driver’s license or identification card
- Insurance information
- Pharmacy Information
- Legal documents (e.g. Health Care Power of Attorney, Psychiatric Advanced Directive, Financial Power of Attorney, other pertinent documents)
Miscellaneous Information
- Caregiver issues: your struggles with the situation and ongoing ability to manage symptoms
- Family issues: impact on the people in your home, other family members.
- Communicating with extended family members, confidentiality issues.
- Any other information that can provide a better understanding of the needs and circumstances of the person with HD.
